Sunday, May 24, 2009

Law should require people who need transplants to be organ donors, says OPO exec

Susan Stuart, President and CEO of the Center for Organ Recovery & Education, has expressed support for one of the ideas behind LifeSharers. Ms. Stuart's organization is the federally designated organ procurement organization for parts of western Pennsylvania, West Virginia, and New York. LifeSharers is a national organ donation network. LifeSharers promotes the concept that everyone who is willing to receive an organ transplant should be willing to be an organ donor.

Here is an excerpt from a story in today's Pittsburgh Post-Gazette:
"If [the United Network for Organ Sharing] allocated organs first to registered organ donors, more people would donate and thousands of lives would be saved every year," David Undis, LifeSharers executive director, said last year.

The concept gets support from CORE's Ms. Stuart.

"I think there should be legislation that if you are put on the waiting list for an organ, you have to be a donor yourself. It's very discouraging when we have a transplant recipient and they die and we approach the family about donations and they say no."

Ms. Stuart's statement is refreshing. Some OPO executives seem to view LifeSharers as a competitor, but our view is that LifeSharers and the OPOs are all on the same team. We're all trying to increase the number of organ donors.

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Directed donation works for Natalie Cole

Natalie Cole, the famous singer, has received a kidney transplant through directed donation. This is the process that LifeSharers members use to give their organs to other LifeSharers members.

Here are some details from a news release issued by OneLegacy:
OneLegacy, the non-profit, federally designated organ and tissue recovery organization serving the seven-county greater Los Angeles area as part of the national organ transplantation network, facilitated the transplant of a kidney to Natalie Cole via a directed donation from a deceased donor.

"As stewards of the organ donation process, OneLegacy collaborates with area hospitals to support families facing the loss of a loved one," said Tom Mone, OneLegacy CEO and Executive Vice President. "One such family generously agreed to donate organs to people in need of a life-saving transplant. Having heard of Ms. Cole's need for a kidney, the family asked that one of their loved one's kidneys be transplanted to Ms. Cole if they were a match."

In accordance with the family's request, OneLegacy donation coordinators then determined through tests that the kidney would be a biological match for Ms. Cole and coordinated the recovery process.

Directed donation is a specific request made by a donor or donor family to direct a recovered organ to a specific transplant recipient. While rare, this practice is recognized by the California Uniform Anatomical Gift Act (UAGA) and occurs most frequently when the donor or donor family are related to the recipient or know the recipient personally.

In a 2006 story on CNN, a OneLegacy representative criticized LifeSharers' use of directed donation, saying "any time you work outside of the established allocation process, you're not necessarily giving the organs to people that are most in need." Now in 2009, OneLegacy's CEO praises the generosity of the family that used directed donation to help Natalie Cole. Was Natalie Cole the person most in need? No, but it was the donor family's legal right to give her their loved one's kidney.

What does the Natalie Cole case prove? It proves that directed donation is legal. It's legal whether organ procurement organizations like it or not, and it's legal whether the recipient is a celebrity or not. Directed donation as practiced by LifeSharers members is legal under federal law and under the laws of all 50 states.

If you'd like to donate your organs to other organ donors, please join LifeSharers at

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Friday, May 01, 2009

Transplant statistics all bad news

The number of deceased organ donors in the United States went down in 2008. So did the number of live organ donors. According to an article on NephrOnline, this is the first time this has happened since UNOS started tracking donor statistics 20 years ago.

According to UNOS data, the number of transplants in the United States also went down in 2008. What went up? The number of people waiting for transplants, and the number of people added to the transplant waiting list. The transplant waiting list hit 100,000 for the first time in 2008. About 50,000 more people will join the list in 2009.

Is there any good news? According to the NephrOnline article, "UNOS also noted that the reported deaths on the transplant waiting list have decreased each year nationwide since hitting a peak of 6,926 in 2004. The current data shows there were 6,229 reported deaths in 2008."

With fewer donors, fewer transplants, and more people waiting can it really be that fewer people are dying? As it turns out, the answer is no. This statistic only measures people who were removed from the waiting list because they died. There's another important category: people who were removed from the waiting list before they died. These people are removed from the list because while they were waiting they became too sick to undergo transplant surgery. This number has been going up.

These people usually die shortly after being removed from the waiting list. If you add these people to the people who died while still on the waiting list, you get a better picture of annual deaths from the organ shortage. Annual deaths continue to increase.

More than half of the people on the waiting list will die before they get a transplant, and the organ shortage keeps getting worse every year. LifeSharers has published a proposal that will turn things around: UNOS should establish two waiting lists. UNOS should have an 'A' list for registered organ donors and a 'B' list for non-donors. UNOS should allocate an organ to someone on the 'B' list only if it isn't needed by anyone on the 'A' list.

More people would donate their organs if refusing to donate would put them on the 'B' list. If UNOS adopted the LifeSharers proposal, thousands of lives would be saved every year.

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